dizzygirl

mom4cem... and Ernie.. I will have to look into what you suggested, I will have to look into it!! What exactly is Zinc?? thanks again linda

Hello all, My goodness I cant seem to win here! I posted about 3-4 weeks ago, and at that time I was sick with walking pneumonia, and an ear infection. Well, I am sick again! I have a terrible ear infection and a nasty cold. I saw the doctor yesterday, and she gave me a strong antibiotic to take along with Mucinex to take too. I dont think that it has even been 2 weeks since since I got over the last illness. My boyfriend thinks that my immune system is down, and not fighting off infections and stuff. I have to wonder that myself. But anyways, I feel terrible, and my pots is acting up badly. I know that infections can cause your pots to become worse. I feel at times that my body is working against me! For the past 2 day, my blood pressure has been high, and my heart rate is soaring into the 170 range and higher. The top of my head feels like it is going to explode! Not even laying down releaves the tachycardia much. its still beating really fast about 135-140, thats not as bad as being in the 170's, but still it shouldnt be beating that fast. Also, do any of you have problems with your legs? I am having a terrible time with mine. I am loosing my ability to be able to walk around, climb the stairs, H*** today I could even bend my legs to get my socks on, how pathedic is that?? My doc's think that it is the pots, causing me to loose my leg functioning. I start physical therapy for my legs next week, and in about 2 weeks I will start aqautic therapy.. so I am hoping that this will help. Do any of you have any suggestions as to what to do in the mean time? I feel like my level of functioning is just going down the drain. OH I am so Frustrated!!!!!! allright well I will stop rambling for now, I have fallen into a deep potsy hole, Help!!!!!!! I feel horrible Linda

hi persephone... I suffer from year round allergies too, I just started taking Alavert for my allergies. Hopefully it works. I use Aveeno oatmeal bath when i get the all over body itchies. it does offer some relief. I hope that you find some relief. Linda

stacey, hi that would be great ..I live in Lawrence Park. feel free to send me a message!

Hi!! this is really cool getting to see were you all are from!! I am from Erie, Pennsylvania. about 10 minutes from lake Erie..

Earth mother, wow that must have been scary for you, with your heart racing. I hope that you are feeling better. I am glad that you didnt have a negative experience with the ER, and it sounds like the Emergency ambulance and police were nice to you too, that is good. I am so glad that the ER doc was responding positivley to your pots. And dont worry about hitting 911, thats what they are there for to help you! So they want you too tke lopressor an extra one as needed? I think that that would be ok, I take an extra propranolol, when I am having real bad tachycardia. I am not sure if propranolol is a beta blocker, I think that it is.. could be wrong though.. Your cardiologist cleared it right? the extra meds? Well I hope that you are resting comfortably tonight and not feeling so potsy!! Linda

I agree with morgan617, it much be a potsy thing! I get a really strong odor of oranges, incredibly strange, but I will put nothing past pots!!

Nina, hi yeah, when I got the thigh high stockings, they use rubber gloves, to show me how to get them on, wrinkle free... they are a pain in the rear, but I still might look into getting them. Thanks nina!

hi, thanks for the info, I will look into the panty hose, maybe those will be beter then what I am using now. maybe now I wont feel like one of those little old ladies constantly pulling up on her thigh high and adjusting her bra strap!!!! HAHA! thanks again

Hi:) I was wondering, I wear compression stockings, and they drive me nuts, with there sliding down!! I am wondering do they make just like compression socks? that just go up to like your ankles or something, and it they do, and the compression socks as efective as the hose? thanks

hi I am stilll learning too, But if I may ask, what is happening when you get overheated feeling and your ears start to ring, and you feel like you are going to puke your guts out?? I get episodes like that, with e few other symptoms... tachy.. pounding head is that like your body trying to adjust to temp. regulations.. BP changes? any one know?

Ernie, that is so wonderful that you got your wheelchair!!!!!!!! I hope that it brings some comfort to your life and makes "living" alittle bt easier! Congrats to you my dear!

oh, is this typical of autonomic problems?

hi all, i know that this may sound stupid, but what is a n autonomic storm or adrenaline surge, I have probably experienced them, not knowing that it was a surge. Is it when you have symptoms? Just curious Linda

Hi!!! welcome to the forum. Sorry that you have pots, it is hard to deal with I know. I am 23 and have been living with pots since I was about 12, and was not diagnosed until I was 20. I was in college, up until about 6 months ago. I was going to be a medical transcriptionist, but my illness took a turn in october and I was in the hospital for almost a week, I finished up the remainder of the semester from home and then I took some time off. I am so close to finishing school! Just another 7 classes to take and I get to graduate! It was a difficult decision to make, but Now I think that I made the right one. At least for me if was right every one is different, when it comes to there level of functioning. You know that you can look into online classes to, if you dont want the hassel of trying to get to and from school, and trying to combat pots, and trying to keep a regular schedule. Online can be much easier on you, physcially. Its worth looking into. I hope that you find some relief with your symptoms, and that treatment works out well for you! please if you want to talk you can email me at freedombutterfly97@yahoo.com its always good to talk to somebody about this. You will find this forum to be very supprotive and helpfull too! Linda

hi all, well I got my "back to work ticket" in the mail yesterday from the socail security office. I was reading that it is voluntary. But I am curious, if you do not participate in this program, do they hold it against you later on, in your medical review? My lord, most days I have trouble getting out of bed and functioning, how on earth would I be able to work?? Crazy I tell ya. So for you that have gotten these, does a review of your case soon follow? I am curious about that. Linda

I know isnt that funny though! LOL

thank you, I will look into a standing order, and the home health care thing, I think I may call my cardiologist in pittsburgh to see if he can set it up, he is the primary one treating me for pots, Chug a lug on the fluids tonight though!! thanks again Linda

Hello all! How are you? Hope that you are doing well. Well here is my beef with the medical community today, they are so infuriating! As I put in my last post, I came down with walking pneumonia, and I have been sick for over 2 weeks now, and I need a IV of fluids. So I call my doctors office friday and talk to the nurse, and tel her that i am not much better, since I was in on Monday, and that I feel like I am dehydrated, and that with being sick and having pots on top of that, I feel that I need this. It has helped me feel better in the past. Well she tels me that My doctor is not in the office, and the doctor that was in was booked solid, so she said to go to the ER, I'm like the Er has no understanding of my illness, I really dont want too. But however I was feeling so badly, that I went to the ER, and they were so very rude to me, they made me feel like I was wasting there time and inconviencing them. I thought OK, Linda just bite your tongue, and wait for the doctor, well the nurse practitioner comes in, and she is like what is the problem you have been on 2 antibiotics now they must be helping,. you. Mind you I was running a fever, my heart rate was up, I kept feeling like I was going to hit the deck, and I couldnt breath! ERRRRR! Then the this NP wants to know what pots is, that she has never heard of, now this I expected, but then she starts talking about how it has to do with ovaries, that what pots is. I'm like no it has nothing to do with my ovaries, POTS stnads for... and it is an autonomic dysfunction, and as I am trying to explain me health problems to her, she put her hand up, and said well I guess we could do a chest Exray on you, I'm like that is all fine and dandy, but I reallt need to have an IV of fluids started, she said that it wsnt necesssary to have that done, This lady had such an attitude, I wanted to jump up and smack her in to reality. OOOOOH! I was so MAD!, I siad for get this and walked out of the ER, they werent even going to try and have an understanding of my pots, or the fact that I have been sick for over 2 weeks, feel horrible, and I know what I need, and then to just totally dismiss me as if I were some fly on the wall!! HELLO!!!!!!!!!!! Then i get home and my boyfriend calls me to see how it went, and he has to understanding or sympathy nothing when it come to my illness. He goes off on a tangent of how lazy i am, and if I did more around the house, and blah blah blah blah! I tried to explain to him more then once about my illness, even tried to give him wensite and info to read, he wont read, he thinks that it is all in my head, that I'm just looking attention. I tried talking to him about the fact that my legs are getting bad, with weakness/heaviness, pain, and that I think it is time for me to talk to the doctor aout getting a walker or a cane, somethin that can support me and that I can hold on too while I am standing, I said maybe on of those ones that have a seat on them so that if my legs feel like they are going to cave, that i can sit, and not have to worry so much about falling down. You know what he did, he laughed at me !! Let me tell you, that hurt my feeling a great deal, and it made me feel very mad too, here I am trying to be open and honest with him, and he laughs. I didnt find it all that amusing. Well I have about had my fill with that crap! SO here is my plan for the IV, I am going to call the doctora office again Monday morning, and make an appointment and speak to the doc directly, and explain to her that I need an IV done please set me up as an outpatient at the hospital, I refuse to go through the ER for anything. and if she doenst help me then i will call my cardio doc in pittsburgh, and get things done that way. Ok I am done venting! thank you for listening to me B**** about everyhting. How frustrated I am! Linda

THANKS!!

Hi everyone. thank you all for your support!! It means so much. Well I had a really rough day today, I am hoping that tomorrow is a better day. I did reschedule my sweat test for next week, I should hopefully be feeling better by then. I am pumping the fluids in as much as I can, I can swallow some today. YIPPEE! Well I am going to go vegg out on the couch and take a nap. thank you all again! Linda

Hello all, Its been a while since I lasted posted. I need to vent! About a week and a half ago, I woke up with terrible chest and nasal congestion. I thought oh great I am getting cold! Well I got some over the counter stuff, that Coricedine HBP, and it didnt help, so like 4 days later I felt so horrible, that I went to the ER to get some antiobiotics. They said that I had ear infections in both ears and that I had an upper respitory infection. I'm like ok, so I took the antibiotic and it didnt touch it. I wake up the next morning and I can barley move my body ached so much!! and I was running a fever, and it just wasnt cool. Well to make matters worse, I had to travel to PITtsburgh to see a neurologist, I didnt want to wait any longer for another appointment, so I pushed myself and went down there. I took the bus, it was a horrible 4 hour ride. So I spent 3 days in Pittsburgh, getting evaluated and having test done, and I made the trip back home, I just kept getting worse. Well low and behold, I had a pots crash! Big surpirse huh? I went to the doctor today to get on a stronger antibiotic, and the doctor tells me that I have pneumonia. And that my throat and ears are badly infected. Now today has been an especially rough day, with being so sick the past week and a half, my pots has been acting up more then usual. I am sure that it is the extra stress that my body is under. But my lord I feel so poorly!! All I want to do is sleep!, thats is all I did sunday was sleep. I am trying very hard to keep fluids in my body, its hurt a whole lot to swallow, I am afraid that I may be dehydrated, I have also been throwing up too. I have a feeling that my next step is going to be getting an IV of fluids. I think that that will help me feel better. Now I have one more question for you all, I am scheduled for a QSART (sweat test) in the morning. How do they know if you are sweating properly from this test? I am curious. I go back to see the neurologist on June 1st, and hopefully then I will have some answers as to weather or not something else is going on or if the POTS is just getting worse. I know that this may sound weird, but if there is somehting else going on I hope that it is somehting that they can treat, and not my pots getting worse. well folks I am running out of words for now thank you for listening to me ramble on and on. Linda

Kitsakatsa- it is so funny that you mention talking to your self,!!! I have to talk myself into walking from the bus stop to the house all the time!! I say ok Linda only 1 more block to go and its short one, but some days that short walk feels like it is a million miles long. Nice to know I'm not alone!

Hi Linda Joy I am so very sorry about your ER visit. I am glad that you filed a complaint though that is good. I suffer from alot of the same symptoms you have mentioned. About the peeing, is there anything that you can do to control it? I am curious, because i have bouts where i feel like I have to pee like every 10 minutes, and I no sooner pee and I feel like i have to pee again. It typically lasts a couple of hours then goes away. Is this because of the Pots?? I am assuming that it is.... Well I wish you luck and hope that you are feeling better soon Linda

Katherine hi:) I am looking into getting a stationary bike, I dont do so well standing upright and walking (as I am sure most of you can relate to that!) I remember reading on a post a while ago about somebody using a stationary bike, because they could sit down and exercise. So I am going to start pricing them.. I also will be starting aquatic therapy.. i am hoping that doing these kinds of exercises in the water that it wont stress my body out to badly, and that I can handle them. SO here's to exercise or atleast an attempt. thanks ! your guy's support means alot! and it helps the blah mood too... Linda